The tale of a girl's adventures with AML (acute myeloid leukemia)

Well now hey now, post 7! I’m on a roll today! I have a couple more post ideas before I finally get to the whole transplant thing, and the road that lead there. But in the mean time, I want to share a list and some other things that have helped me with my journey.

This list was written months ago, but it still applies. Perhaps I will make an edited one when this is all over, but for now, this one will suffice. Top 10 list of “lessons I can currently think of that I’ve learned throughout this whole AML deal.”

1. You are not your hair. I used to think I was, but when I shaved my head I found I was much more confident than I had been before because I had nothing to hide behind anymore. I miss my long hair, but it will be back.

2. You are not your sickness, and it should never be called “my” this or that. It doesn’t belong to you, nor do you belong to it. You’ll kick it’s ass.

3. Hot showers will become even more precious and should be enjoyed to the utmost extent. (Even if that means using all the hot water… Sorry family, and Tim)

4. (This one’s still in the works…) Don’t be afraid to speak your mind, especially when your health is concerned.

5. Even when it’s hard, smiling is good. No one expects you to be happy 24/7, but any attempt to lift your spirits is good.

6. People are incredibly kind and selfless. For all the evil and negativity in the world, I believe goodness reigns supreme.

7. Eat what you can, when you can. There will be pressure, but take it all in stride. Eventually you’ll get your appetite back.

8. Foot rubs/back rubs will feel even better than before, and should rarely be refused (hey, you’ll be good as new soon enough, may as well enjoy it while it lasts…🙂 )

9. Good company makes a huge difference. Even if you’re asleep while they’re present.

10. Be patient. Some days it will be the most difficult thing imaginable, but you’ll get through it, and when you do, you’ll be stronger and wiser than you were before.

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Next up is a poem I wrote (whilst intoxicated at a brewery), that I stand behind 100%, even as a sober person.

“Cancer.

Cherry Pie, Out My Anus

No More Pubes

Fuck you,

Cancer.”

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Next, is the quote (I wish I knew exactly who it was by, but I can’t seem to find a consistent source. So just know it was not at all written by me.) that helped to get me through the days in the hospital, and the tough days at home.

“Fate whispers to the Warrior,

‘you cannot withstand the storm’

And the Warrior whispers back,

‘I Am The Storm.”

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And now, is the genius idea my mom came up with pretty early on during this adventure. If you’ve ever head of Drunk History (on Comedy Central), we decided that when I’m better we will make a spoof called “Drunk Leukemia” where I will basically rant and say whatever comes to mind regard specific questions, moments, or whatever that happened during my experience with AML. Good shit, I’m pretty pumped for this to happen!!

I’m sure that after all of this I seem to be forgetting something major. But I felt that it required its own post, since it would make things far too complicated to insert it all into the correct place along this journey. Not to mention I have no idea when specific things happened anyway… But that’s beside the point!

What I want to address now is support. From family, from friends, but above all else from strangers.

Since this began (now almost nine months ag0– which is absolutely crazy to think about!) the outpouring of love, support, positivity, prayers and other unspeakable kindnesses has absolutely astonished me and has had as much of an impact on my health as it has the rest of my body and soul. I remain, to this day, unable to find the appropriate words to even begin to describe the sheer appreciation, love, awe and respect I have for everyone who has helped me and my family. From making my family dinners while I was in the hospital being tended to by my parents, to kindly gifting goodies, giving/making HATS (which are pretty much a form of currency to me!), to sending cards, and sending good energy and prayers for us all. I really don’t think I would be able to have come as far as I have and overcome the obsticals that I have without the support system that formed out of the goodness in people’s hearts. I wish that I could begin to describe how thankful I am for everything that everyone has done for me/us. Cancer sucks, and if any of you have seen Deadpool and remember the line that goes something along the line of “The worst part about cancer isn’t what it does to you, it’s what it does to the people you love” I found particular interest in that. Because I can’t begin to imagine what my parents, brothers, boyfriend, family, friends, or any other number of victims of my diagnoses went through. While I was fighting the biggest battle of my life, for my life, there was great suffering all around me, to an extent that I probably will never be able to fully understand and appreciate. But while there was suffering, all of this support played a crucial role in all of our well beings. So while every act of kindness and selflessness, no matter how small, was sent in our direction, every single bit of that positivity helped me to fight, and helped all those around me fight as well. I’m not sure which of those I’m most thankful for, and I don’t think it would ever be fair to rate one above the other. The humbling feeling of a community, not just geographically, but across the Internet, the globe… That is something I will carry with me for the rest of my life, and I hope that I can return the love that was sent my way in a time of need to others who require the same gift.

While transplant happened 14 days ago today (I’m two weeks old!!!) I still have quite the journey ahead of me while we wait for the new marrow to engraft completely, wait for the GVHD (Graft vs. Host Disease) to set in a be monitored, and every little hiccup along the way, but I can honestly say that I have perhaps more to fight for now than I did before, and I will fight this shit called Cancer until the day I die– seeking to raise awareness, help others who are going through experiences like those that I have, and doing what I can in hopes that there will be a day that no one need to fear the word “cancer”. That no one suffer from it, in any sense of the word.

Here I go, being a bit sporadic again, but hang in there. Something else I failed to mention that I am incredibly thankful for are the VISITS that I recieved during my stay (and the visits that continue, too!). Even when you’re feeling shitty after chemo, or from any number of side effects that will no doubt occur as a result from the plethora of medications being taken, having people visit is a lifesaver. The distraction passes the time, and if you’re as lucky as I was, you’ll have people on standby waiting to come rub your aching feet, or your sore back. People to give you “spa” treatment, people to give you face-to-face words of encouragement, advice. People who care about and love you, and will do anything to make your time pass a little bit easier. Friends are one of the greatest medicines there are– and like me doctor said (this is medically prescribed, by a licensed physician, so it’s gotta be true!) He said that the friends that stand by you during a time like this are friends that will remain beside you for life, and I believe that whole heartedly. I am unspeakably lucky for my friends who have remained with me through this nightmare, and luckier still for the friends that I have made while on this journey. I owe everyone a great deal, that I will never be able to successfully pay back. But I seek to try and pay back all the goodness that has come to me.

I will be posting about this stay at the hospital I am currently undergoing (hopefully soon!). But it was necessary to address this topic before plowing onward!

Thank you, from the bottom of my heart, to everyone who has helped me/us. It means more to me than you will ever know, and more than I’ll be able to show.❤

I remember getting the results of one particular culture very well. Chemo had tainted my tastebuds, so I wasn’t very motivated to eat considering lots of things tasted like what I assume cardboard would. But when I got the hankerin’ for something, more often than not it would be brought to me by marvelous souls who tended to my almost-every wish (I guess I wasn’t worth smuggling in my cats😉 ). In this particular case, I wanted more than anything to chow down on a Las Vegas roll from Biwako. The idea of the bastardized deep-fried roll had my mouth watering, and I could hardly wait to inhale its sweet deliciousness. When it arrived, I did just that– I’m pretty sure I tasted less than I would have even with functioning tastebuds, since it hardly had time to touch my tongue before it was down my throat, taking the roller-coaster ride to my belly. As I was pigging out, a nurse came in and broke the news as to the results of the cultures. Turned out I had a blood infection (which would be identified as enterococcal septicemia) and that it was detected from the blood drawn from my PICC line, which meant that I would have to have it pulled… My second PICC in less than two months that was fucked up. Great! I remember the hunger melting away as a sick feeling crashed over me in a giant wave. I got cold as dread took over. Not exactly because my line would have to go, but more so because I knew that without it I would need IVs and would require peripheral blood draws. Cultures would continue to be drawn every day until my blood was free from infection for three straight days. This process would take about a week. Never did I think I would want so badly to have yet ANOTHER PICC placed, but over the following days I could hardly wait until it was time for the third (and– spoiler alert– final one) put in. My already shitty hospital sleep was hindered even more by the dread that lived within me between the hours of about 9pm to 5am. I knew that if I managed to fall asleep I’d be woken up by the “vampires” and I’d have to be poked. So, of course, in my always-anxious state I pretty much banished the already scarce sleep and replaced it with hours of worry. Definitely not proud to admit that, and even still I am a huge baby when it comes to needles. But this specific time of my life perhaps solidified it. It got to the point where I was poked so many times that my stupid veins gave a big “fuck you” to the phlebotomists and became even more difficult to find than usual. Not only that, but there were a few days where they couldn’t draw any blood from me. At this point, I had blood clots in both arms from both of the failed PICCs, so they could only drawn from my hands and no higher, which really limited their ability to get anything from an already pretty limited source. After what felt like forever my cultures finally came back clear, and I was scheduled for my next PICC placement. That bad boy would last me until I was discharged, and it would be removed not because something was wrong, but because everything was right, and it was time for it to go. But we have quite a while before that time…

I have always enjoyed singing. I’m not particularly good, but I don’t intend to make a living off of it, so I’m not too worried. One night I was listening to some music and singing my heart out, when a tech came in to take my vitals. My heart rate was in the 120’s which was quite a bit higher than it should have been. I attributed it to the fact that I was singing a lot, hoping to make it not that big of a deal. However over the next few days it continued to be elevated. I was sent to receive an ECHO, and the results told us I had cardiomyopathy, and my EF was functioning at only 14%, when a normal healthy heart functions typically between 50-65%. Since I was now experiencing heart failure, I again left the relative comfort of 8A and was moved down to 7, the cardiac unit. For quite a while I was on oxygen (as I had been on and off during my stay) and always hooked up to an EKG. When we would walk around in the halls, there were monitors by the nursing station that showed all the patient’s heart rates. For the first 3-4 days of my 7 day stay mine was almost always the highest, at about 120-130bpm.

This is where the major backstory sort of ends. After 7 days in the cardiac unit, I was discharged after two months in the hospital. The first major leg of this medical adventure was over, but in the not-so-distant future there loomed the next phase– transplant. Because the AML I was diagnosed with was determined to be in the “intermediate” range (it had a higher chance of recurring later) a bone marrow transplant was in the cards for me since the start of the whole cancer-roller coaster. The Cancer Coaster– ride at your own risk. Hah! Ugh Cedar Point should hire me…

Anyhow, as I continue to post updates now they will be from the newborn Katie (as of today, I am eight days old!) since I have received my BMT. Not out of the woods yet, but every day is a step closer to returning to normalcy!

After the whole cherry pie incident, along with the countless other setbacks I had already experienced, you’d think I’d have “paid my dues” so to speak.

Think again.

I recovered from the gastrointestinal bleed, surviving possibly the most dangerous event since my diagnoses. I never thought I’d be so thankful to move from one floor of a hospital to another. I was back on 8A– my home away from home! With my familiar nurses and less-terrifying rooms. We had slight hopes of coming back to the floor and receiving a larger room (the one I had was incredibly small! It got the job done just well, but some extra space wouldn’t have been unappreciated.) Funny enough, when we came back to the Homefront we were placed in the exact same room. Which, I was pretty okay with. It was familiar, and had become a standard in my new concept of “normal”. Things were going pretty smoothly for a while (a couple days, a week? Who knows. But there was a period of time where things were good, and for that I was thankful. When the shit began to hit the fan again, it was because my next bone marrow biopsy showed that I still had leukemia cells. The first round of chemo had been unsuccessful. Since my previous bone marrow biopsy had gone so catastrophically terrible, we had the SWAT team attend to me for my procedures requiring sedation. The biopsy was rough again, initially at least. One of the doctors or fellows or whatever suggested I try taking a dilauded and an Ativan instead of using the sedation. I wrestled with the idea for a while, and finally decided I would give it a try. I wasn’t very positive about the whole situation, but I wanted to get it over with as soon as possible, and we would have had to have waited until the following day to have SWAT help us out. Well, as I should have expected, this biopsy was awful, but for different reasons. It still was painful, but less so than the initial one. They were unable to retrieve a sample, so I had to wait until the following day anyway to have them try again– this time with sedation. Oh! Actually I can’t believe I forgot this, but after my first biopsy they asked if I wanted to see the samples. They said that it was the size of a pencil lead, so I pictured the tip of a standard #2 pencil when the sharpener fucks it up and a chunk of lead falls out from the wood surrounding it. Nope. Nopenopenope. What they meant when they said “pencil lead” was actually like an entire piece of 0.5 MECHANICAL pencil lead. So, that was pretty great. It was actually the second time in my life I had managed to see part of my bones.

Intermission– I am currently in downtown Saline at Carrigan’s Cafe writing this entry as I enjoy one of my last days of pre-transplant freedom. I mentioned to mom what I was writing about, and apparently THE DUDE DROPPED MY BONE MARROW SAMPLE ON THE DAMN FLOOR!!! What. The. Fuck. I went through all that internal strife to do it without SWAT, and HE DROPPED MY FUCKIN BONE ON THE FLOOR! Oh man, I’m a little bitter now. Fuckin’ fuck! FUCK! Mom said that she and dad noticed the oops at the same time, and that the room just stopped and everything stood still. Then he was like “well, we should probably have what’s-her-face come and do it, she’s the best.” But what he really meant what “oh fuck. Maybe I should have had what’s-her-face do it the first time around.” Not even “whoops sorry guys, just put your child through some pretty miserable shit and I FUCKED UP.” Actually, probably better that he didn’t say that. Subconsciously I probably would have heard and might have tracked him down and… Well, anyway. A pro of this experience? I was told I have strong bones. Might be shitty cause they gave me The Cancer, but at least they’re strong and osteoporosis isn’t in my immediate future! (I’ll take what I can get these days!)

Alright, back to the tale. So the next day SWAT came in and gave me the good stuff. I always enjoy watching my surroundings, trying to get myself to remember when the meds hit. They’ll tell me, “here comes the first dose…” Nothing. “Here comes the second dose…” Nothing. “Here comes the third dose…” Maybe things start to feel like a dream? “Here comes the fourth dose…” And then I wake up and it’s all over. In like five seconds. But god damn that is some of the best sleep you will ever get in your life. Totally get why people get addicted. It’s like… You die, go to heaven, shoot the shit with some good souls, have a few brews, and then before you know it you’re back, feeling like a million bucks. But I digress. When I came to after this particular biopsy, a doc was standing by my feet and asked how I felt. Completely serious, I looked at her and asked, “have you ever seen ‘How I Met Your Mother’?”… I don’t know what she said, because as soon as I asked, I got this far-away feeling like I was reminiscing on some good ol days and I stared dreamily out the window. Now, what was typically a view of Ann Arbor (go figure!), had turned into the New York skyline, complete with the bank that Ted Mosby designed. As I looked at the building, I raised my arm and pointed at this phantom scene, stating, “see that? Ted Mosby designed that building.” I turned back to look at the doc, and noticed that everyone in the room was looking at me, completely perplexed and possibly a little alarmed. This knocked me out of my first-ever hallucination as the sleepy smile fell from my face and I stated, “I’m not making any sense, am I?” I got a silent chorus of shaking heads in response. That was a pretty great time, though. I always thought if something like that happened I would spill some secret or something, but no, I just talk about HIMYM. I guess that works out alright.

Well, after this remarkable experience, things were pretty mellow for a while. Well, as mellow as it could be, being in such a situation. I began my next round of chemo (Oh, really quick, when I was in the ICU I was 8 liters ahead, meaning I had had 8 more liters of fluid pumped into me than I had had out. Remember this. It will be critical for a whole other part of this tale which I will revisit eventually. Sorry for the interjection, just remembering things here and there!). So chemo itself went great, and all things went better in the sense that hey, I wasn’t in the ICU. So cheers to that! But of course, it wouldn’t be any “fun” without some setbacks, right? Sure. At one point, my eyes started to get incredibly dry. It felt like I had sand lodged in those gelatinous marbles, which I’m sure many of you have experienced at least something similar to that at at least one point in your life. Well, things continued to get worse for those poor jelly-orbs. My eyes watered constantly, making it appear that I was sobbing without the frown. Or snot. So at least I had that going for me. For THREE STINKING DAYS I was “blind”. My eyes were shut 24/7, well, almost. Minus the few times I attempted to open them and try to see through the stinging blur. Those attempts were short lived. The ophthalmologist came in, maybe at day 1.5? And determined that I was producing low-quality tears (who knew that there was such a thing?! Not I!) so I was given drops and a Vaseline-like gel to smear into my eyes before bed. It helped, not immediately, but nothing but the onset of my leukemia and hospital stay had really been “immediate” during this experience. Then one night, when Tim came to stay with me (it was always so wonderful to have him stay the night. Visiting was awesome, too, but hanging out and being able to have him spend the night gave me a little sense of “normal” which I thrived on. Not to mention his company and support has played a major role during this whole thing. Alright, enough sappy-ness!) it must have been around midnight, (time means nothing when you’re in the hospital. And it’s fuckin terrible. No one has any respect for your sleep, or anything!) and we were still awake and hanging out, even though I was Stevie Wonder-ing it up, and I decided to try and open my eyes again. And this time, when I did, I could see! And the burning was much less than it had been before. I was so excited, I got Tim to assist me, and we went for a walk around the unit several times. I was so excited to be able to see! It never crossed my mind that hey, maybe I’ll never be able to see again. But looking back, I guess that could have happened. But a lot of things could have happened, and a lot of things DID happen.

Once the blindness dissipated entirely, things were pretty calm for a little while longer. However, eventually I began spiking fevers (which wasn’t uncommon, since my immune system was still shitty) and every time a fever occurred, cultures would be drawn to make sure that there wasn’t an infection in the blood. The cultures would be drawn from the PICC line, and also peripherally to try and determine where it was coming from. So, when my fevers started popping up again, cultures were drawn. I didn’t think much of it, since I’d already been through some shit I figured that hey, maybe something would go according to plan. Well, in this instance that wasn’t the case.

Ah, cherry pie! Sounds like a delicious dessert, right? Well, by the time this is over, you might never want to eat it again, and you might not even be able to look at it the same way, so consider this your warning.

Going through chemo for leukemia it pretty taxing. I’m sure all chemo for all cancer is taxing, but of course I can only speak for myself and my experiences. Chemo for leukemia seeks to essentially eliminate your bone marrow. This drastically decreases the number of RBC’s, WBC’s and platelets. This leaves a patient anemic, without an immune system, and with a higher risk of bleeding without the clotting properties of the platelets. Knocking out the bone marrow allows it to start again and kick it back into gear producing healthy, normal cells. Basically it provides an opportunity for the marrow to get its shit together and stop being a little bitch.

During this round of chemo, since it was my first, the dramatic decrease in my counts was more noticeable to me in retrospect than the other two that I have undergone. Fatigue runs rampant, hand washing becomes even more critical than usual, masks are often required and extra care has to be taken not to injure oneself. At the lowest point, my platelets reached the alarming number of 3. That, in combination with the fact that chemo kills the body’s rapidly developing cells (like hair), left me in an incredibly dangerous position. And now we approach the discriptive part!

Having a bathroom connected to my hospital room was incredibly nice, and necessary as well with my immune system being gone. Since my arrival and beginning of treatment, everything bathroom-related was going just fine for me. My pee smelled weird because of all the chemicals and drugs running through me, but that was about it. But on one particular day, I started having to poop more and more frequently. It started out “normal”, but as the day and frequency of the deuces progressed, it was obvious that something was wrong. At first there was a little bit of blood involved, but as the shits got even closer together (we’re talking I would finish, go to bed, and immediately have to go back again) the amount of blood increased. It got to a point where a nurse told me to page every time I had to go so that a parent and a nurse could help me since I was getting incredibly weak, go figure since I was literally bleeding out my asshole. I remember the last time sittin’ on the toilet before being rushed to the ICU. I had just finished the millionth shit of the day, and went to stand up. Suddenly I got severely light headed, my surroundings faded out, and I saw the floor rushing to greet me. My helpers caught me and helped me make my way back to bed, and then I was off to the ICU where I would spend the next four or five days.

Being in a hospital can be scary. But being in the ICU is a million times more terrifying. You’re there for a reason, and regardless of why you’re there it’s always because shit is really fucked. In my case, the lining of my intestines was shedding because of the chemo, but I didn’t have enough platelets to clot and heal the wounds that were left behind, so I had to excrete the blood somehow. I was too weak to get up and go to the bathroom, so I would have to roll to the side, lift myself up as best I could to have a pan slipped under me before I rolled back onto my back and let loose the hellish feeling of what I imagine cherry pie feels like being excreted out one’s anus. It was one of the most unpleasant feelings I’ve encountered to date. Shitting blood clots is not something I recommend anyone try or seek to achieve– it’ll fuck you up. Plus, it feels disgusting as fuck. Now, I never saw it (thank God because I’m pretty sure that would have been Game Over right then and there!) but believe me I felt it. It starts out with the undeniable urge to take a shit– imagine you just nomed on some major Taco Bell, and then a couple hours later it sucker-punches your gut. We all can relate to that, right? Sure! And then when you prepare to relieve your bowels, it feels like literal cherry pie is being excreted. Buttholes experience some pretty gnarly shits I’m sure, but for me, this one tops the list. I was amazed at how sensitive the ole poopshoot was– it felt ALL the cherries. All. Of. Them. Shitting blood clots… Let me tell you, it’s a rough time to say the least.

I was constantly filling these bins with my homemade cherry pie filling, getting weaker and weaker as I expelled a significant amount of blood. I was so exhausted from raising my hips to have new bins placed under me that I started to simply roll onto my side and hope my ass would be over the bin when I rolled back over. I think I was pretty successful with that. Who knows. At one point, I recieved 16 units of blood products in a day– so huge thank you to everyone who donates blood, because your donation makes a HUGE difference to people in need. If you don’t donate but are eligible to, I highly suggest you look into doing so. That’s kind of hipocritical for me to say, since I was a pansy and never successfully was able to donate blood, but now that I see how absolutely critical it is to have blood products available I wish I had put on my big girl panties and made a positive difference in other people’s lives. Without that blood, I wouldn’t have survived. And how embarassing would it be to shit yourself to death? I think I’d haunt myself in that situation!

The ICU is stressful. And I think it’s safe to say that it’s stressful for everyone involved. For me, this period of time was the absolute worst out of my entire eight-week stay. The care was wonderful, but the ICU is just not a place anyone should want to be unless you’re a nurse. I remember first arriving to the unit and telling myself I’d only be there for a little while, and then after that counting the days that passed. I didn’t want to be in the hospital at all, but being there I wanted so much to go back to 8A to my familiar room and familiar nurses. But, of course, I had to finish this stage of my journey before I could proceed. There was one day I was sitting in the chair in my room (look at me! I was getting stronger! Still shitting blood at an offensive rate, but at least now I could do it on a toilet!) and my Nana called. I put on my happy “phone voice” and talked to her for several minutes, summoning all my strength to sound energetic so as not to worry her more than I’m sure she already was. While we were talking, nurses came in to start taking vitals, and another came in to get an EKG. This was the first time in years that I had a legitimate panic attack. I had gotten so little sleep over the past few days, I had just used all the energy I was capable of producing to talk to my Nana, and now I was being bombarded with tests and questions and all that jazz. My eyes got blurry and everything got muffled and looked/sounded far away. My heart started pounding and I started to hyperventilate as my body went into sheer panic mode. I hardly knew what was going on, and I couldn’t think straight. I remember feeling like a caged animal. I wanted to bust out and run down the hallway, and out of the hospital. I wanted to run back in time to when things were normal and I was healthy. I wanted to go to life BC… Before cancer. Eventually the panic wore off and I was able to calm myself down, but that was a horrific emotion on a different level than the ones I had felt before since being in the hospital.

For a lot of the time that I was in the ICU I was on oxygen since I struggled to breathe successfully by myself. At a certain point in my stay, when things were really going shittily for me, I recall there being talk of me maybe having to be put on a ventilator. That idea above almost anything else scared the living shit out of me. Not being able to talk or eat horrified me. But more than that, the idea that I would need that much help introduced me to my first thoughts of “Oh my God… I could die from this.” Up until this point death had been sort of a far off phantom of a thought in my mind. Sure it was there, lurking somewhere in the shadows, but it was never in the spotlight. But being in as bad of shape as I was in the ICU really brought that to light. It was a scary thing for me to think about, especially at that time, but I think it was important for me to realize. Up until then I wasn’t really afraid of death. It was something that happened to everyone and everything at some point, and because it was inevitable why worry? For me at this time though, I started to realize how much I still wanted to accomplish in my life, all the places I’d yet to visit, and the experiences I had yet to have. Realizing that maybe all those things wouldn’t happen was alarming. Growing up they were things I’d always assumed would happen, because that was normal. I’d finish school, get a job. Get married, have a family. Those are “major” events that I had mapped out roughly in my mind, but there were other, smaller things as well. The position I was in mentally in the ICU really had a massive impact on my thoughts and outlook. I remember having my dad sitting by my side and me, so desperately wanting to sob and admit I was so scared I was going to die. In my head, if I said the word “die” I’d let that negativity in, and I was scared that it would take over my thoughts and overpower my will to survive. Saying that “forbidden” word, to me, would seal my fate and usher in the cold hands of death. Talking to dad this fear was addressed carefully, the whole time I managed to avoid saying the “d” word, but even so the topic was clear and it felt so good to get the weight of that fear off my shoulders. Once it was addressed, I was able to let it go and focus again on my getting better.

At another point in my stay in the ICU it was required for me to have an ART poke, or an arterial poke where they inserted a needle deep into my wrist to access an artery so they could measure the amount of oxygen in my system– at least that’s what I remember them saying. I was also informed that it would be incredibly painful. Which is never exciting to hear, especially not for Miss Anxiety, but even though I wasn’t excited for it I did appreciate the heads-up. I clasped my dad’s hand tightly with my left while my right was extended towards the nurses. Our faces were just inches apart and I made it a point to focus on his eyes– to stare at them and cling desperately onto both his hand and every word he said since I asked him to just keep talking to distract me from the pain. At that moment and even now I don’t remember feeling a thing. Maybe it hurt so badly my brain blocked it out, but I think focusing on my dad was what really made the moments pass by quickly and painlessly.

While in the ICU I also had some tests done to determine where the bleeding was coming from (obviously this is a little out of order but bare with me here). My stomach, liver, kidneys and the like were examined to make sure they weren’t suffering from the chemo or anything. I would be wheeled off on a stretcher to have these tests done, and of course I wouldn’t have a bin with me. Thankfully I never donated cherry pie to the stretchers I was on, but it was definitely a concern at the time. I’m sure the nurses have probably experienced worse, but I just didn’t revel in the idea of leaving my bloody shit around for other people to clean up.

As far as I can remember that’s about all I can remember about my stay in the ICU. I met some marvelous people while I was there, like the Chaplain Tommy who provided wonderful and very much appreciated company. I had visitors from 8A come check on me, and although it was hands-down the most difficult time, it was made easier, like always, by the quality of company that surrounded me and the copious amount of thoughts, prayers, and positive energy that was being sent in our direction.

And thus concludes that scariest chapter in my stay at the hospital! I hope that that was as bad as it gets for me during my treatments. Surviving that makes the other unpleasantries that I did and would experience that much more bearable knowing that it wasn’t Cherry Pie Syndrome.

Once my terrible, awful, no-good biopsy was complete, we waited for whatever unknown would follow. I was moved to 8A, which would become my home (or, as I felt on some days, prison) for the next long while. I started chemo (I think?) the day after I was in the ER. The first few weeks, although difficult in the sense that 1) I had cancer and 2) I wouldn’t be able to go home until they deemed it acceptable, were mostly “good”. By that I mean I was in good spirits a lot of the time, and this whole thing, although shitty, was an adventure. That sounds weird, like I was glad it was happening… But I wasn’t. Anyway, another slight interjection– since this is sort of a ranting session punctuation and all that isn’t really my top priority right now. Or probably ever in these posts… Whoops. Okay, back to it! I knew pretty quickly that my hair would more than likely fall out, and I couldn’t think of anything more horrifying than having my long hair fall out in clumps in my hands. So I figured that since this cancer thought it could determine what happened in my life, I’d show it who was boss. It wasn’t really a difficult choice to cut my hair and shave my head. I had always wanted to donate my hair, but whenever I went to get it cut I’d chicken out, unable to part with my long locks. But now– now— was the perfect time. I had probably a good ten inches hacked off and sent away to make wigs for kids suffering hair loss, and that was the first time I felt I gave the cancer a big “fuck you!”. Instead of seeing the situation as me losing one of my favorite things about myself, I saw it as a wonderful avenue to take with positive results on both ends. And I still see it like that. Someone somewhere will be enjoying my hair as much as I did, and I learned to accept myself as a baldy. I had made a plan that a friend would do the honors of buzzing off my remaining locks, and I’m so glad that I did. Although I was in a good place mentally, the situation was made even more enjoyable by being surrounded by such wonderful people. Before I achieved optimum-baldness, I figured we may as well have some fun. First I rocked a Ben Franklin ‘do, then more of a friar cut. Ultimately I rocked the Matt Stimac, the hair style of my dad. Being able to laugh was such a wonderful thing. Never would I have thought I would voluntarily shave my hair, nor laugh the entire time, but it happened. And I don’t regret it for a second. In a situation with such little control, being the one to decide when and how I lost my hair was an incredibly empowering feeling. I was also surprised to see that I didn’t look like a complete weirdo without hair. In fact, I sort of liked it. And in a situation where you’re not going to have hair for a while, it’s probably a good thing that I was able to accept that. Now, there were definitely hard times where seeing my shiny scalp was upsetting. Everyone experiences good days and bad days, but I felt like mine were amplified. I much preferred to be in positive moods, and laughing was definitely something I tried to do often. But I had my fair share of what we deemed “moments”. There were a handful of times I’d look into the mirror (I think I went about a week after getting my head buzzed that I didn’t really look at myself, or my head) where I’d feel emotion crash over me. It was rarely a violent “holy shit I’m going to drown in this torrent of emooooootion” but it was more of a melancholy wave of “how did this happen?” And tons of other answerless questions as well. These times were mostly short lived when compared to the times of smiles and laughs and for that I’m definitely thankful.

I don’t remember specifically when this next bit happened, but I assume it was pretty soon after my arrival to 8A. Instead of being poked all the time, I was to receive a PICC line, which was a three-lumen catheter that was inserted into the upper arm and allowed one to receive blood, chemo or whatever else is required (blood can also be drawn from it, which is awesome for labs). The idea is brilliant, especially since, like I mentioned, needles are not my friend. However the procedure was done in my room with only lidocaine. In concept, that’s totally fine. For other patients who aren’t me. Before I even started the procedure I had a bad feeling about it. I don’t remember a whole lot, but I know it didn’t really feel like anything after the fiery feeling of the lidocaine faded into a joyous numbness. It also wasn’t a particularly long procedure, but I was anxious the entire time. That’s something else– I’ve always been incredibly anxious. Usually about just about anything, too. But throw me into a situation like this– a fuckin’ medical situation– and nope, nopenopenopenope there is no such thing as “calm”. Not for a while at least. Well, shortly after receiving this PICC (shortly meaning a day or so) my arm was sore and, although I’d never had anything like a PICC before, something just didn’t feel right. An ultrasound was conducted, and it turned out I had a DVT as a result of the PICC line placement. This was pretty shitty for several reasons. 1) it would have to be removed, which meant MORE anxiety 2) no PICC meant more IV’s and a need to be poked 2-3 times daily for labs 3) a DVT meant I had to be extra careful not to dislodge it, and therefore certain motions were restricted and blood pressures could no longer be taken on that arm. The good news about this shitty experience was that from then on when I got a PICC line placed I’d get to be under conscious sedation in the IR unit. Now, the fact that I was out of it is good, the fact that I needed another PICC, not so much. The second PICC would last a decent amount of time…

Now we’re gonna get a bit out of order I think. After the first round of chemo, which lasted a week, I started to get neutropenic fevers. Those weren’t a huge deal, they were mostly the result of having zero immune system, and they often lasted a pretty short amount of time although they happened pretty damn frequently. I LOVE to be warm. And when I’d get the chills and start (fun fact, I’m in bed typing right now and I accidentally typed shart instead of start hahaha! I’m a child…) shivering uncontrollably I was completely miserable. I couldn’t wait for the Tylenol to kick in so I could heat back up. My fevers ran pretty consistently between 100-104 degrees, which might sound awful but I was never alarmed by that. As the days after my chemo passed, and my immune system continued to decline, I got plenty of transfusions (both blood and platelets) and started to develop mouth sores. Now, those aren’t particularly fun. It starts out feeling like you bit your cheek or you have a cold sore growing by your gums, and as time passes it evolves into this white chunk of skin that aches like no other. Talking is difficult (I think I nailed my Don Corleone voice as a result, though!) and eating is almost impossible. Between the pain in my mouth and the chemo making everything taste like cardboard, there was a long period of time with little to no food consumed. Typically whatever I did eat would end up coming back up not too long after. I would get oral morphine to help the pain, but it hardly made a difference. The sores only lasted a couple of days, and after that I started using their “salt and soda” mix to try and prevent that from happening again. But now that the sores were gone, it was time to usher in the next, and worst, of my complications. I like to call this my “Cherry Pie Phase”. Stay turned to find out why…

Disclaimer: This blog probably isn’t the definition of kid-friendly, so that said be forewarned that vulgarity, possibly offensive jokes or statements, graphic descriptions and other such things are guaranteed to be included in these posts. Sorry not sorry, the tales I have to tell aren’t the prettiest. Enjoy!

Part 1:

Note: as I was writing this, I started to realize there is a lot that I have to say and a lot that needs to be said regarding my tale. So I decided to do this in increments since that’s probably the best way to go about this.

Well hello! My name is Katie, and I am a 22 year old from Michigan. For the most part of my life I’ve been healthy (minus a broken arm, scoliosis, a goddamn SEXY occasional lazy eye and other minor issues). Life was, by my understanding, pretty normal. I was going to a local community college, had a job, hung out with friends, went out to bars and enjoyed going on road trips and driving around– pretty normal stuff. That all changed pretty fuckin’ quickly. In fact, it changed so quickly I still think I’m whirling from the shit show my life became for a couple of months.
Now, because I’m starting this almost 6 months after the fact, I’m fairly confident that this story will be insanely chaotic– skipping some things, interjecting others… All that good stuff, as I remember it or as I feel it’s relevant. So basically this is going to be one hell of a ride for both of us. Good shit! Anyways, here goes…THE BEGINNING:

So here’s the deal. I’d been working for an animal care service for quite a few months and was in the process of taking over the business (big shit for a then 21 year old right?!). Everything was great– the animals, the people, the PAY! But towards the end of September 2015 things started to get more difficult for me. I wasn’t the definition of “in shape” at the time, but I definitely wasn’t out of shape. I’d walk quite a few miles every day and it took a good amount of work to tire me out. But as October loomed closer, I started to get exhausted quite easily. The walks I went one would be shorter, and I’d be out of breath embarrassingly fast. There was one specific occasion where I was walking this darling chocolate lab named Thor, and I simply couldn’t manage to take him on his typical half-hour walk. I made sure he took care of business, but as soon as he was done I started to stumble my way back to the house. Now, he’s an older dog, but has the heart and personality of a puppy. Typically, I adored his energy and the joy he expressed at the great outdoors, but on that day I could barely take it. I managed to get him back inside, (the house was being renovated at the time, so he was staying on the upstairs portion of the home) but I kept having to stop while making my way up the stairs. Thor was romping around, excited as could be, and while I would usually find this adorable and sweet, I was pretty tired of his shit. I collapsed near the top of the stairs, and the big ol chunk of love bounded back down the stairs, pulling the leash from my hand and running around the unfinished house. Sitting on the stairs feeling my head reel and my heart pound, I yelled out his name– frustrated with why I was feeling the way I was and not at all in the mood to deal with his case of Puppyitis. He came back to me, and after I put him away I went into the bathroom and slumped over the sink, splashing cold water on my face to expel the shittiness I was feeling. It lessened enough that I could continue with my day, but it still stayed with me. INTERMISSION– something important to know about me while reading this tale, is that I am an incredibly stubborn person. If I’m injured in any way I usually play it off and pretend it’s fine. If I’m sick, I pretend I’m not. If I don’t feel well, I ignore it and think that it will go away. I have a habit of suffering in silence (even though to those close to me, like my boyfriend, might disagree) and have the mentality of “don’t mention it and it’ll pass. You’re fine.” … That also accounts for my dislike of being the center of attention. MOVING ON: back to the story we go. A couple days passed where I was constantly in this funk. Fucking funk is more suitable, actually. (Like I said, prepare for vulgarity, and potentionally an unnecessary amount..). One morning I had to be at a family friend’s house around 5:30AM to be there to help their sweet daughter get ready for school and get to the bus. I woke up feeling shittier than usual– I felt sick, my entire body was exhausted, I felt weaker than I ever had before– but, me being me, I pushed through it and showed up at their house. As I walked in a remember thinking that I should have sent my mom instead, but I had agreed to this and because of that, I made myself go. Things internally were going rough for me, but I put on my well-practiced facade and acted like everything was just peachy. I was standing at the railing of the stairs as our family friend was explaining the normal routine for the mornings, and I remember thinking “I need to sit down and drink some water…” But then my stubborn side saying “oh shut up you pansy, you’re fine. You’ve never passed out before, and you’re not going to now.” Aaaaaaaaaaand then I heard the mother say, “Katie?! Are you alright?!”. Sure enough I had passed out, collapsing onto their tile floor. I came to rather quickly (or, at least I assume I did) and stood up, embarrassed. I shook it off and apologized for the scare, but assured everyone I was just fine, I just needed some water. The rest of the day went on just fine, minus the lurking feeling of unusual exhaustion. More days went by in this haze… Being the queen of rationalization, I assured myself that I felt this way because 1) I hadn’t been sleeping well 2) I hadn’t been eating particularly well 3) I was dehydrated almost every day and 4) I was working incredibly hard and was stressed out as a result. Made perfect sense to me! Then, one Saturday (I think it was a Saturday… I suppose it isn’t really important) I experienced one of the worst headaches I ever have. It made me nauseous, my eyesight was fucked up, and it just wasn’t a good time. However it passed after a night of sleep, but when I woke up I had a different issue to face: I had a significant blind spot in my right eye. The middle 25-30% was a dark, shadowy circle that impacted my sight so much that I couldn’t (or rather, didn’t) feel comfortable driving. Again, however, I ignored it mostly. It was scary and unusual since I had never experienced it before, but I rationalized that, since I’d had a cough for a while I must have suffered retinal detachment… Or something (I had only a vague idea of what retinal detachment was, and in my head it wasn’t a huge deal… But I guess it is. Who knew?) I went out with my boyfriend that day, exploring estate sales like we so often did looking for military-related items (definition of excitement, I know, but for us nerds this kind of this is the SHIT!) Finally the spot freaked me out enough that, with the encouragement of Tim (yes, the mysterious love interest has a name!) I agreed to go to Urgent Care (NOTE: this would be the second time he would encourage me to stop being a stubborn ass and go get looked at– so shout out to that guy, who really probably saved my life, or at least got me in sooner than I would have otheriwise.) I was freaked out, but not terribly so. I still figured it was something little that would be easily fixed (I still have no fucking idea how retinal detachment is dealt with but in my head it was “oh look you’re a lil fucked up let’s fix that in like two seconds and getcha back on your way!”) At the second, wait, THIRD urgent care we went to I was finally checked out (one had been closed and the other “didn’t deal with that sort of thing…”. The nurse stood me about 15 feet from one of those eye charts with the letters on it (I’m so well informed, I know) and had me read the letters of different rows; once with my left and then with my right. When it came to my right my eyes welled with tears. I couldn’t see anything but a black-gray spot. He continued to ask me to read a bigger line, and then the biggest one, to which I choked back the sobs that were threatening to erupt and told him that I couldn’t see those, either. Honestly I was a little pissed– like, hello I’ve told you I literally CANNOT see the chart, so what the fuck difference does it make if the letters are bigger? ! Like I said, a little pissed. As a result of this appointment, I had one scheduled at the Kellogg Eye Center the following day– actually that’s a lie, I went to another clinic first, and THEN to Kellogg. Damn. Okay, this was like six months ago currently and a LOT of shit has happened since then, so, like I warned, this is going to be one fucking chaotic ride. Bear with me. MOVING ON: at Kellogg (yes, I finally ended up there I swear!) My dear friend Sarah stayed with me the entire time. It was an appallingly long appointment, with what felt like dozens of tests and more of those shitty whatever-the-fuck-they’re-called-eye-chart-things, all of which my right eye STILL couldn’t see. When the docs came back with the images of my retinas, the showed rather disconcerting spots of blood, they roughly explained my blind spot. Calmly– CALMLY– the doctors explained that my retinas were fine, but I was suffering from one of three potential things 1) I coughed too hard and ruptured some vessels 2) I was anemic or 3) I had leukemia. FUCKING LEUKEMIA. Also, in retrospect I like how she put that lastly. Like, oh you’re PROBABLY fine, but you could have FUCKING CANCER. But anyhow, there’s still some more background of cover before we get to what, if you read the description of this blog, we all knows ends up being the case. I had some blood drawn while there (I HATE needles… Hate them!! And remember that, because it’ll come into play later in our story here) and then Sarah and I continued on our way. When we got to the van and started our return journey, I called my parents and told them what I had learned; starting with my cough might have fucked me up, I might have anemia, ORRR that I could have leukemia. (Quick intermission; it’s taken me an embarassing amount of time to be able to spell “leukemia” without thinking about it, and I just did it, so believe in yourself cause dreams can come true! …. That’s a joke, but hopefully you get it. I’m not as funny as I think I am.) The funny thing about the whole “possible diagnoses” thing was that when I heard leukemia, I immediately shrugged it off– I don’t have TIME for cancer, I couldn’t have cancer! It just didn’t add up. Things like that didn’t and wouldn’t happen to me! I of all people wouldn’t and couldn’t get cancer, especially not this young.The rest of the day passed mostly normally– minus the fact that I could hardly see shit out of my right (and dominant!) eye. Nighttime came, shrouding the cool fall environment in a crisp chill, and I went to sleep in my own bed, in my house, surrounded by my family and my cats. It was a relaxing night. A relatively typical night. I snuggled into bed, content, not realizing how insanely my life would change in a matter of hours.
12:38AM rolled around and our home phone rang with its obnoxiously shrill tone. During my public school days if this had happened during the winter I would have hoped and prayed (and expected) that it was a call alerting us of an ever-precious snow day. But this time I was in college, and it was the end of September; Michigan weather is weird, but not THAT weird. I heard one of my parents answer the phone, and several seconds pass in silence. Then, they put it on speaker phone. I didn’t really listen, nor did I particularly care what was going on, so I snuggled back into my covers and ignored the disruption. A minute or so later the light in the hallway snapped blindingly on and my parents came charging into my room– throwing my light on in what I can only describe as a parental panic. They informed me that the U of M ER was waiting for me, and that my WBC count was over 150,0o0 and my hemoglobin was 4.3. This meant nothing to me. I groggily requested that we go in the morning since I had been so happily asleep, and anyways what could be so bad that they needed me ASAP? I was told that, no, we couldn’t wait until the morning. The urgency in my parents voice is what scared me the most, not that I was going to the hospital. If my parents sounded that alarmed, something was really wrong, and that was the first time that I felt the dreaded wave of unknowing crash over me. My body felt cold– like I’d been hit with a wave from Lake Superior on our beach where my family spent time every summer. My heart was pounding, and felt like it dropped into the spot labeled “dread and terror” in my stomach. My head reeled as I tried to rationalize what was going on, but this situation was so unexpected, so utterly disabling that my talented and well-practiced rationalization skills were rendered useless. Quickly I threw together some things– my phone, a charger, a book, a change of clothes, my wallet. I called Tim, who I knew would be sleeping but I needed to talk to. With no answer I hung up and called again and again, bursting into terrified tears as I told him I was off to the ER, and that something was wrong but I didn’t know what. The ride to the hospital was, as most of this story is, a blur. Others, like my parents, or Tim, probably recall things differently which I totally expect to happen. I’m just documenting what I recall and piecing things together as best I can, a therapy of sorts, whether or not it’s entirely true😉 Once we got to the ER we were taken back, and the shit quickly began to hit the fan. We’re talking industrial-sized fans and nasty elephant diarrhea shit, here, too. Not pansy-ass office fans and cat crap. I was plugged up to an IV, and had people whirling about. From what I’ve heard, we spent 15 hours in the ER, waiting for another room to open up. While we were there, Tim showed up (earning him an endless amount of brownie points) and I was told I had cancer (initially it was thought to be ALL, but obviously ended up being AML.) I got my first bit of chemo while the docs figured out what the hell they were going to do with me, and, of course, I can’t forget to mention I received my very first bone marrow biopsy. Those things are BASTARDS. But mostly because this first one I received was done with ineffective painkillers and introduced me to the true definition of physical pain. Stubbing your toe sucks. Getting a disabling injury? Damn, that’s no fun. Having someone insert a needle into your hip, “drill” it down, and remove it? Definitely not a good time. The lidocaine feels like liquid fire being injected into your skin (and not the good liquid fire your throat or belly feels when ya get a good taste of whiskey!) which is uncomfortable. But when they start drilling into your bone, now THAT fuckin’ hurts. It’s a pain that quite frankly I can’t find the words to describe. The area around where the needle is inserted experiences a strong pressure, like someone is digging their elbow into the spot. But at the core, where the needle burrows through your skin and deep into your bone, it’s a nauseating sensation. You can feel as it digs deeper and deeper into a part of you that should never be violated by a needle, or anything else for that matter. I was clinging tightly to my mom’s hand as all this was going on, clenching my eyes so tightly together that I ruptured blood vessels while desperately trying to escape the miserable feeling. Despite my eyes being clenched shut, the tears slipped out and rolled down my face and onto the white sheets. I was gritting my teeth, trying not to make a sound. Like I mentioned, I tend to be the suffer in silence type, but this time that wasn’t the case. To date, that has been the worst pain I have ever felt and hope I never have to experience anything that painful that I truly can’t find accurate words to describe. The good news about this experience was that all other bone marrow biopsies to follow would be done with conscious sedation (later you’ll notice a parallel with my experience with PICC lines as well, but we will get to that.)